click here or the image.
Don't get me wrong - I love weebly. But - there's no comment spam filter and the app doesn't give enough control over images. I've found a rather awesome app for my iPad that gives me heaps more control and makes it easier for me to post. So - I've moved my intermittent fibro blogging to wordpress.
click here or the image.
I'm like the princess and the pea...if clothing has a printed pattern on it I often can't wear it because it will hurt my skin too much. Seams, tags, labels - all potential causes of pain.
Needless to say, it's taken me a long time to get my bed and bedding to the point where it's comfortable enough to sleep in.
For example - a seam on a nightie can cause excruciating pain. Pain out of all proportion to the size of the stimuli.
So how is it that I managed to sleep laying on my iPad stylus? Yes you read that right. I couldn't feel it. At all. All night.
...that's all I have the energy to say!
Fortunately a hot bath with Epsom salts has helped me to feel less suicidal :) and thankfully the V+ box is (hopefully) recording Doctor Who for me.
Sincerely hope that anyone reading this is having a better day than me. If you're not - well they do say misery loves company ;)
I was out, a week ago, for the first time in probably four weeks.
First time socially for about, gosh, 3 months? We went to the cinema to see the final Twilight movie.
There have been five films. I managed to see the first and the last at the cinema. Every other time I had to cancel at the last minute and let the others go without me. Not only that but I wasn't well enough whilst it was still on at the cinema to go and see any of them on my own.
It was good, I enjoyed it. But then we went for something to eat. I should have come home - but I guess I was a bit carried away with the novelty of it. I mean, I have to eat, right? At least eating in a restaurant you just sit and the foods brought to you.
Anything chronic is indeed chronically awful.
But I'd driven in case I came home after the movie.
I was flagging as we arrived at the eatery, by the time we'd eaten it was dark and for some reason the car's windows had steamed up inside and it's COLD here now. Not Finland cold I know, but cold for us.
I came home and took some morphine as I could feel the nerve pain starting and every bit of me hurt. Went to bed for two hours. Got up, ate, took evening meds.
Then took a hot flush.
Went back to bed - basically wishing I was dead. Everything hurt, I was so tired I didn't know what to do with myself. I knew I wouldn't sleep.
You also start to think, what's the point sleeping anyway, it only helps about a quarter of the time.
Its a week later. I wrote the above (or versions of it) to a couple of dear friends the evening after I'd been out.
It's been a really bad week. Right now, I wish I hadn't gone out. Nothing is worth feeling like this.
Who can understand that apart from another Fibro sufferer I wonder? Are there other chronic illnesses with such a wide range of cruel and unusual payback possibilities? There must be...what a depressing thought.
I mean for goodness sake. I drove to a cinema 10 mins away. Sat on my butt in a comfy seat watching a good movie for a couple of hours. Drove to a restaurant 5 minutes from the cinema. Sat on my butt and was served food.
But I was out of the house almost five hours.
I need to remember that during a good patch my limit is three hours tops. And I'm not having a good patch right now.
Aaaargh! I hate this!
Who would believe you could feel this bad after doing so 'little'?
This illness sucks.
Sleep...that's at the crux of it.
The days this week that I've had a private theatrical meltdown (see above GIF ;) have been because the pain was so bad and I felt so hopeless. They were also the days that followed an especially poor night's sleep.
Here's to regular visits from the Sandman...
...when you're chronically ill.
This week I wanted to write up the notes I made about the various herbs and supplements which apparently help fibromyalgia.
But the regular monthly hormone ’stuff’ has hit me along with the new menopausal ’stuff’ and Fibro is trapped (and reacting) in the middle.
I'm a sort of wretched hormone sandwich.
So, no blog post today. Sorry.
´Come sweet slumber,
enshroud me in thy purple cloak.´
(Yeah, I'm a child of the 80's, it's from 'Paranoimia' by The Art Of Noise With Max Headroom)
So, yeah, sleep :(
Many in the medical profession still consider that Fibro should initially be treated as a sleep disorder. We don't get much in the way of restorative sleep, so this strikes me as a sensible way to approach tackling some of the symptoms.
Most medics start with the pain symptoms - also, a seemingly sensible way to begin, but the sleep issue tends to continue to take a back seat. Well, in my experience anyway.
Readers of my tweets and others that know me may be aware (haha) that I'm currently having some hormonal issues.
I started with what I diagnosed as peri-menopausal symptoms about two years ago, but as I was about 43 at the time my GP refused to consider it as a reason because my bloods were clear and I was too young.
Well things have progressed to the point were not only has nice doctor lady used the ’M’ word but she also prescribed hormone pills.
Now it's an indication of how desperate I was at the time that I agreed to this.
Never again. Please.
It took a few days for me to figure out that the increase in energy and the massive decrease in sleep, along with wildly varying mood swings were the hormone pills - so glad was I to not be bleeding for the first time in ages. I persisted stubbornly for 6 days before the sleep depravation was intolerable. (And when a Fibro peep says that - trust us, things are bad.)
This was September 15th. Almost a month later and I'm still not getting much sleep and it’s making everything much worse. Aside from the cursed menopausal stuff...
It was at this point that i finally began to research herbal solutions.
I was trying to see if there were any herbs that helped with the menopausal changes AND Fibro symptoms. Interestingly it's led me to to conclude that Fibro has three important factors that I sincerely hope researchers are, well, researching.
1- There is a link to oestrogen levels.
90% of Fibro sufferers are women, so my Lovely Doctor Lady's disbelief aside, linking the disease to hormones is a no brainer in my opinion.
There's some other evidence to support this but I'm a bit rubbish about note taking these days. I'll come back and edit this.
This webpage mentions some research about hormone links towards to end of the article.
2- The herpes virus
Research is indicating this at last, something I've long been convinced of because I was VERY ill with chicken pox in my twenties and shingles triggered my Fibro.
Research is indicating this one as well, there would appear to be some kinds of hereditary genetic anomalies that enable the herpes virus to alter the production of neuropeptides. I also remain convinced that there is also an hereditary problem with low serotonin and melatonin levels.
Not being a geneticist or even a scientist I have no idea if these are linked or just an unfortunate coincidence.
Hopefully my fingers will agree to type up the notes I did manage to make regarding herbs and supplements for next weeks post. (Yeah ambitious I know aiming to post each week...anyone care to lay odds?)
But until then, one important discovery I made was -
I used to take it every day to help my liver to cope with all the heavy duty meds I'm on. Not any more. I'm currently trying beetroot...
To explain - I'm disabled but there's no way my brain (and thus body) would be able to cope with my being an athlete. Gentle exercise, simple daily activities, heck even just sitting down all cause me a lot of pain. I no longer have much strength in my limbs so I can't wheel myself in a wheelchair (even if I had the energy and could bear the pain it would cause.) But this doesn't stop me finding the Paralympics inspiring. Heck I was in tears more than once when I was watching it...overcome with positive emotions, not envy. I think it's fabulous for making the differently abled (god that sounds so PC doesn't it?) more visible and getting people to talk about some of the issues.
'The Last Leg' that followed at 22.30 on C4 also did a fabulous job at breaking down the barriers. We worry too much about taboos and saying the wrong thing. If you're genuinely interested and mean well - ask away. It's the patronising dismissives that cause offence, not the well meaning inquisitives.
I'm doing the best I can. If there was a job I could do, trust me, I'd be doing it.
Do you think being housebound most of the time is a choice?
That I like;
If only all people had an open mind. A mind that doesn't judge and does its best to understand what it cannot see.
I never viewed all children as the same when I was blessed with the privilege of teaching them, (especially when I was a special needs teacher) so my hope is that society won't start judging all disabled people as super humans who don't need help and support.
UK peeps - Here's a useful source of disability news.
Reading another chronic illness blog I see that there's talk of re-assessing any paralympians who are on disability benefit...
This is a 'grabber', sometimes also referred to as a 'helping hand.' We got this free from our local council, (I know, amazing huh?) and it's so useful I'm not sure how I managed without it.
I use it to pull curtains closed, pick up things I've dropped, reach for things higher than me, drag stuff nearer to me to save me having to get up...
...There's also a magnet on the end too which can pick up metal bits from the floor.
I've seen these for sale in Lidl and Aldi for under £5 and there are a variety of places online that sell them too. But check with your local authority first to see what living aids they provide for free or at a reduced cost.